It’s not just a lung thing

This post goes back to what some might describe as the ‘CF basics’ - and I know that a lot of my followers from the CF community will know all of this inside out!

But as it’s #cfawarenessmonth I thought I’d dedicate a post to the very thing that shocked me the most when Arlo was diagnosed with CF: it’s not just a ‘lung thing’.

I was very quick (and terrified as a new CF parent) to discover that it affects so many parts of the body.

Not only that but it also hugely impacts day to day life and requires a lot of time, commitment and consistency to do all the treatments requiredto stay in as good health as possible. All of which is totally unseen - done in the early hours, or before bed, and almost always safely from the privacy of your home when nobody else is around to see the work it entails.

See the graphic below for an outline of the many ways that CF can manifest itself for those that have the condition. It can affect the lungs, the sinuses, the pancreas, the heart, the liver, the skin, and much more.

But as I have said before, CF manifests itself differently for each person with the condition, so there is no way to predict how many of the things on the list might show up for Arlo. For instance, CF related diabetes affects around 50% of people with CF.

All I know is that this is one of the things that is hugely misunderstood about CF. It’s not just the lungs that are affected - it’s a battle fought throughout the whole body every day.